Diaganoised in feb

[Les2051]

Hi

Took ten months but on feb 4 th was told yes u have lupus ??

Did not have a clue. And still not quite sure

Have a lovely lady who lives in the next town to me and has bin a great help to me and my family and now I found this web site x

[bam1993]

Hello and welcome to the site- I am newly diagnosed too-but was told in 2008 that it was just Fibro, I knew all along that it was more!! I have found this site really helpful, and am also going to join (£10 a year and I think you get qtrly mags) and apparently there is a DVD for all new to Lupus for £2 (gonna treat myself to that too!) It is good being in touch with others that really understand how you feel x

[Les2051]

Hi thanks

DVD sounds good let me know what's it like . Yes u must join loads to read very helpful loads of useful items . First time I have ever chatted on line said I would never do it well it's not like face book or Jeremy Kyle ha ha nice to chat to a newbie by 4now

Les2051 x

[janiceray]

What bam1993 states is true.She has Joined Lupus U/k and its is £10 and it will be the best £10 you will spend,not only will you get the Qtrty mag but if you are in an area that has a local group you will get News letters also.and if you feel you want to chat over the phone there is also a list of Contacts.

Lupus U/K also has a lots of leaflets.

You can contact them on 01708731251 or lupusuk.org.uk

and we are on Facebook & follow us on twitter@lupus UK.

You are never alone we are here for you.

Love & Sunshine

Jan x

[Les2051]

Morning loves I'm so so pleased I've found this website thanks 4 phone number ect never ever done anything like this b4 great 2chat 2 someone that knows what I'm going through thanks again

Lesley X X x x

[mstr]

Hi Les, welcome to the site, which is brill as said above. I'm also a newbie diagnosed and would never have contemplated what I call a 'on line chat thing before'. However, it is more than that....it is well monitored, genuine people on here (you can tell), inspirational journeys that people have been on with this condition, sound advice from those that have been handling it for years and more than anything just the best support ever. The best advice is read from reputable sites like Lupus UK, get information from them, join a support group (if you can from Lupus UK). We are all here for both the down days and the good ones. Glad you have joined xx

[Silvermyst]

Hi Les and welcome

This site has been so important to me as for the first time in the 8 years since my diagnosis I finally have others to share with and draw along side. The support you will receive from this forum is invaluable. I hope that it benefits you as much as it has me

In respect of your Lupus, your best defense is (as Mstr said earlier) is to get to know the condition and how it effects you on a personal level. Read up, arm yourself with information from reputable sites and make sure that you learn to know your own body really well. Over time you will notice patterns and triggers that will help to manage flare (eg. if the sunlight makes it worse then alter your lifestyle to minimise the risk) and the most important thing is to make sure you don't overdo it or you will end up in a worse situation with increased problems. It just isn't worth it.

All the best Les and feel free to send me a personal message if you would like to chat more x

[Les2051]

Hi not surs if I have sent u a message I have wote one

I have a I pad and not sure how to use ti yet x

[rlupus]

Hi All, Glad you have joined lupus uk i go and pack the mag every quarter its full of info i have been diagnosed for over 20 years now and find all the info very helpful as so many people do not understand lupus,I am very lucky i have a great GP who takes care of me, I can get very down sometimes as i have to go my doctors twice a week for blood tests as i have lupus , antiphoslipids (sticky blood) i have had over 18 clots in my legs, 4 in my lungs ,chronic obstructive airways , and everything else that goes with it, I take anything from 30mg to 50mg to thin my blood but it never stays in range and my ESR is always high !

Anyway hope you fing the mag helpful and the DVD,

Good luck and keep well xx